Lyme Literacy: A ‘Chronic Fatigue Syndrome Chronicle’ Pt. VI

Dr. Eugene Eskow, family practioner and my first Lyme doctor, Flemington, New Jersey

Sometime in 2002, three years after the flu shot that did me in, I received a phone call from Carol Mekjian, a woman I had known before she moved from Highland Park with her husband, a physics professor, and two daughters. A mutual friend had told her about my illness, and she was adamant that our symptoms were the same.

As I listened to her describe the agonies of her last 10 years, I did see similarities. She revealed that she finally had been diagnosed with Lyme Disease. But I had been tested for Lyme right away, by Dr. Kallich, and then again by Dr. Levine, and both times the results had been negative. “That’s the usual pattern,” she explained. “Often patients with Lyme don’t test positive for many reasons. You have to see a “Lyme Literate” doctor, someone very familiar with the peculiarities of this disease. And you need to find someone who will treat you aggressively!”

I was certain I didn’t have Lyme. I never saw the tell-tale bulls-eye rash, and, surely, the infectious disease specialists who did the blood tests must know enough to read the results accurately. But what the hell?! If I could let hydrogen peroxide drip into my veins, why not try this direction and visit a Lyme specialist? Carol gave me a few names, and I chose Dr. Eskow. I don’t remember why.

The road now led to Flemington, New Jersey and a bare office with just Dr. Eskow and a nurse. I sat in the waiting room, feeling as sick as ever, and sure I was wasting my time. This was another pleasant looking doctor who listened carefully to my symptoms and asked questions about my treatments. His responses indicated that he knew a lot about Lyme. He took blood and urine samples and told me to return in two weeks.

And two miserable weeks later, Steve and I walked into his office to learn that the urine test came out positive for Borrelia burgdorferi, or Lyme Disease to the uninitiated. Dr. Eskow was convinced that was my problem. Not only the urine test but all the clinical signs pointed to Lyme.

Ohmygod! I had a diagnosis! I was no longer to wander through the falling-through-the-cracks wilderness where you imagine cancer, multiple sclerosis, Guillaume-Barre, brain tumors, Parkinsons, Lupus, and a million other frights that prickle your skin when you wake up at 2 in the morning. Or through the Slough of Despond where skeptical pilgrims assume you’re a hypochondriac or psycho.

Dr. Eskow prescribed antibiotics, and Steve and I walked out of his office, stunned. Riding down on the elevator and on the ride home, we just kept repeating – I don’t believe it, I don’t believe it.

I took the antibiotics and got worse. When I returned to his office in two weeks, he took more blood and urine, and prescribed another antibiotic. I got even worse. At my third visit, Dr. Eskow explained that the recent tests revealed a co-infection, which he explained is typical with tick bites, because those nasty sucking creatures harbor a variety of sqirmy things.

I didn’t have Ehrlichiosis or Babesiosis but I did have Bartonella, an organism which Dr. Eskow himself had identified for the medical world as a tick-borne disease often associated with Lyme.

Whoa. All these spirochetes have been swimming through my bloodstream and taking up residence in my body tissue? For 3 years? I’m doomed. This time the good doctor handed me a prescription for Doxycycline, which should be effective against both Lyme and Bartonella.

A simple mistake with doxycycline takes a year to recover from.

Idiot that I was, I didn’t bother to read the tiny print of the leaflet provided by the drugstore, and Dr. Eskow offered no explanation of how to take this latest med. I swallowed it with a sip of water, and then, sick as usual, did what I usually did: collapse.

After a few days on the Doxy (Lyme sufferers use nicknames for their meds: doxy, clindy, zith, etc.) I got a vile sore throat, and a few days after that, my chest burned and I could hardly swallow. My depression grew along with my pain. It seemed, said Dr. Eskow, I had esophagitis.

The reason? Doxycycline must be taken with a full glass of water, after which the patient is not to lie down for at least 30 minutes. Otherwise, there is a danger of damaging the esophagus. Oh? Interesting.

It took a year for my esophagus to heal, after visits to two gastroenterologists: A year of endoscopies, Prevacid, Nexium, Reglan, Tums and lots of liquid meals.

Earlier in my illness, I had joined that Chronic Fatigue Support Group that met in Robert Wood Johnson University Hospital. Each week a group of about 12 women and 2 men gathered to share woes and describe treatments, doctors, and coping mechanisms. I lasted about a year, disillusioned with the repetition and not benefiting as I had hoped from the camaraderie.

Sometimes support groups works and sometimes they don’t. After a couple of sessions, with a doctor’s name in hand, Carol moved out on her own.

Now with the Lyme diagnosis, I decided to try a support group again, with the encouragement of the acquaintance who had first told me about her Lyme. This Lyme support group met on the first floor of a New Brunswick church; a more friendly and exuberant male AA group met on the second floor. No one actually welcomed me and I stood anonymous and alien while others arrived, hugged, and chatted.

Again, I listened to the litany of successes and failures, alternative treatments (Rife machines, steam baths and saunas, licorice, cat’s paw) and doctors beloved and/or despised. After two or three more sessions, I never felt a connection and decided to drop out, but not before I had learned of Dr. Lesley Fein, considered one of the most aggressive Lyme Literate doctors in the area.

Another wave good-bye, this time to well-meaning Dr. Eskow, and again, Steve accompanied me to my first appointment to Dr. Fein, an hour away. After sitting for hours in a packed waiting room filled with heartsick patients who seemed to have suffered for years before the intervention of Dr. Fein, we entered her office, where she questioned me for another two hours and then sat me in her lab so her technician could draw blood for more tests.

A pretty, dark haired white South African Jew with an aura of Elizabeth Taylor, she wore spike heels to remedy her short plumpish stature. Her white lab coats opened enough to reveal cleavage, and she always had a snack handy, usually crackers and cheese.

Dr. Fein was a tyrant to her office help, who seemed terrified of her: The stocky tattooed male receptionist with the shaved head who called everyone “Love” and “Sweetheart”; The tall and striking assistant with gorgeous hair who wore tight pants and clingy tops though she was way overweight. They and the succession of lab assistants all jumped and got defensive when she scolded. And she often scolded, impatient with too many screw-ups, some of which I believed were more her fault than theirs.

Each visit I listened to waiting room complaints about the wait times. “I drive all the way from Western Pennsylvania (or upstate New York or Richmond, Virginia). I know I’m going to sit here for three hours, but she’s worth it.”

The patients, mostly but not all women, had developed an informal, ad-hoc support group. Everyone knew everyone else. They compared symptoms, medications, lab test results and hospitalization stories. And they seemed to enjoy providing newcomers like me vast descriptions of their suffering. I often felt trapped and left more depressed.

On my second visit, Dr. Fein said that lab tests confirmed the Lyme diagnosis. Subsequent blood and spinal fluid tests also confirmed Bartonella. But this doctor didn’t fool around. She started with intravenous antibiotics. Shock and Awe. Okay.

My prescription medicine insurance covered the cost. Cynthia, the visiting nurse, began the process by inserting an IV line into my right inner elbow, and I received the first treatment of Rocephin in the office. It took about two hours. Further treatments I would administer at home myself, and Cynthia would visit me once a week to clean out the IV line and monitor my blood. A pharmacy would deliver the medicine.

I was so totally psyched! I had a disease with a name and a remedy! I would get better. I was back in the world!

The IV line didn’t work well. It hurt too much. I had to go to a local hospital to have a sturdier and longer-lasting PICC line (peripherally inserted central catheter) installed in my left upper arm. I lay on the operating table with my left arm extended, and the surgeon injected some numbing stuff but didn’t wait for it to work before he jabbed something into the soft underside of my upper arm. Immediate firey pain.

I’m a good girl so I didn’t’ scream as I lay there, but the agony squeezed tears out of my eyes. I left with instructions to use a heating pad to ease the pain, but I didn’t sleep all night and I took Advil for two days without much relief. And then my whole arm, from shoulder to wrist, turned a hideous black and purple, deep and vivid like I’ve never seen before. Amazingly, however, the pain did subside and then completely disappear, and I was able to hook up the IV antibiotics successfully.

Each session took about two hours, followed by another hour of IV vitamins. My life was now solely about these daily infusions. This was when I discovered that some version of Law and Order was on TV any time you wanted to watch. I also surprised myself by becoming hooked on Buffy the Vampire Slayer, Coach, and Malcolm in the Middle, great shows I’m sure I scoffed at earlier in my non-sick, snobbish Masterpiece Theater life.

After Rocephin, I infused Doxycycline, Bactrim, Zithromyacin, and probably a few more antibiotics I can’t remember. Nothing helped. I continued to be just as debilitated, depressed and anxious as ever. I kept a chart of my symptoms for Dr. Fein, who examined them closely at each visit. She saw patterns which she attributed to the infamous Jarisch-Herxheimer (fondly known as a “herx” or “immunopathology” by the Marshall Protocol) effect, first associated with patients suffering from syphilis. As the spirochetes die and give off toxins, the patient feels sicker. But that’s good. It means you’re killing bugs.

I guess I was reassured and continued for over three months on this regimen, hooking myself to the bulbs of liquid antibiotics and then to the bags of vitamins, thinking that at least a doctor had found a diagnosis and had faith in a treatment. But that damn Herx complicated and caused confusion with all kinds of treatments. Was I having a bad reaction to the medicine/treatment, or was the feeling of relapse due to the die-off or “healing crisis” or “immunopathology” caused by my body’s response to the death of bad organisms?

Only gradually did I discover all the controversies surrounding the diagnosis and treatment of Lyme Disease. Books and websites revealed disheartening news. The CDC (Center for Disease Control) insisted on a very narrow criteria for diagnosis, calling for positive lab results on particular blood tests, which not all Lyme-infected sufferers (known as Lymies), for various reasons have.

‘Lyme Literate’ doctors used a wider variety of tests as well as clinical observation and patient history to determine a Lyme infection, and then see if antibiotic treatment helped, thus confirming the diagnosis.

The ‘hidden pathogen’ theory is common not just in Lyme Disease but in ME/CFS as well.

Actually, many doctors believed that no Lyme test could be 100% accurate, because the Lyme spirochete may hide in body tissues and not be detectable in blood or spinal fluid. The ELISA (Enzyme-Linked Immunonosorbant Serum Assay) and Western Blot tests might fail to find the Lyme antibodies, and the PCR (polymerase chain reaction) tests which looked for Lyme DNA in body fluid might be too sensitive and result in seeing Lyme DNA everywhere.

That’s a ridiculously brief summary of a very complicated process which has patients furious. One group of doctors ran around squawking, “False Positive!” and the other “False Negative!” Again, I tried very hard to concentrate and understand the details, but the medical terminology defeated me every time.

If I indeed had Lyme, then I’d been infected for at least three years. And if the original infection occurred the only time I remembered anything resembling tick bites, when I returned to our hotel room after a hike in Montana’s Glacier National Park and found a series of black dots around each calf along my sock line, then I could have had the slimy creaturesgnawing at my vitals for more like six years.

But the whole mess is made messier because doctors and researchers can’t agree on whether chronic Lyme Disease actually exits, or what the preferred length of treatment should be.

After the prescribed length of time for IV meds, and with all the opposing views undermining my confidence, we tried shots of penicillin and then Biaxin. No change.

Then came months and months of antibacterial pills without improvement. The cost of all this was over $20,000 (not including the antibiotics, which were paid for by prescription insurance). My Horizon Blue Cross/Blue Shield refused to pay and Steve and I wound up suing the State Health Benefits Program. We appeared before an administrative law judge with our own lawyer and Dr. Fein as a witness, and after months and months, the judge finally reached a verdict in my favor. I was happy but still sick.

I continued to see Dr. Fein, using friends or Steve as drivers. She put me on other meds which I believe helped: Florinef for my very low blood pressure and Lexapro for depression, and for the first time, I was able to tolerate an antidepressant. I started with microscopic doses and built up to 20 mg, a therapeutic dose. Amazing! One day I noticed that my murky depression had more or less evaporated. I was sad but not stuck in hell, focusing on my every loss. Wonder of Wonders! Miracle of Miracles!

Too bad I was still sick.

While I was Dr. Fein’s patient, she referred me to a bunch of other specialists: a psychopharmacologist, a neurologist in Manhattan, a doctor who specialized in the treatment of fibromyalgia, and a famous Lyme psychiatrist from Columbia University Medical Center, Dr. Brian Fallon, who turned me upside down when he said, “Well, you didn’t test positive on the Western Blot Lyme test, so it’s more than likely, after all, that you don’t even have Lyme.” (It was like I was told I wasn’t good enough to join this sorority.)

Since I don’t remember all of their names, and since I only saw the psychopharmacologist maybe three times and the others only once each, I am not dwelling on them. I developed no relationship with and received no actual help from any of the three, so I hereby step right over them and assign them to oblivion. (One of them, the youngish psychopharmacologist, actually died in 2007, but I’m not responsible.)

Dr. Fein was persistent and dedicated; she cared and tried hard. Like all the other proprietors of inns on my pilgrimage, she believed in her approach and I do think she was one of the sanest. Too many of the others, like the greedy innkeeper from Les Miserables, were (sing along with me): Master of the House, Doling out the charm. Ready with a handshake, Or an open palm. Yeah, I exaggerate. But it’s a catchy song.

Next time: Before describing my current doctors and medical situation, some interludes.

13 Comments

Carol, have you ever had a liver ultrasound. Very un-invasive. If not, get one. Don’t rely on blood tests, they can be fine, until the damage is large. Guess how I know? If necessary, tell them you have a persistent pain in your right upper chest. RP

Issie
on July 27, 2013 at 2:55 pm

I can so relate. I have felt that a lot of our health problems relate to the immune system and it’s inability to recognize the things we need to eliminate in order to be well and healthy. (I also suspect that genetics are at play and that is why some may have the weakened immune system to start with.) Many of us have known autoimmune dysfunction problems -(I have hypogammaglobulinemia and yet at the same time my immune system attacks me (vitiligo and alopecia and a positive dsDNA at one point).I was found to have protomyxzoa rheumaticia and another co-infection associated with Lyme disease – ehrlichia. My doctor – and also the doctor that discovered this protozoa – Dr. Stephen Fry- also works on the immune system as the best line of defense in trying to tame these protozoa and bringing the immune system back on track. (Here is an interview of his findings and some of the illnesses that he feels could be connected to the protozoa. http://protomyxzoa.org/wp-content/uploads/2013/04/Protozoal-Infection-Dr-Frye-Interview.pdf ). Dr. Fry has found that the patients that adhere to a low fat vegan diet seem to have the most success with regaining their health.(It has been found with protomyxzoa that fat – keeps it happy and healthy.) The protocol also involves low dose antibiotics and antimalarial drugs. The main thing is breaking down the biofilms that virus, bacteria and protozoa live in and surround themselves with, a type of protective force field. And then the antibiotics and the immune system can recognize and eliminate that which may be causing so many of our problems. It’s so wonderful that we have doctors who are searching for more reasons why the dysfunction is occurring in the first place and searching for the answers we so desperately need to improve our lives.

I hope that your story has a happy ending. Mine is going in a positive direction. It’s something that will take time as breaking down biofilms has to be done very slowly since if too many are released from the vein walls – it could potentially cause a blood clot. I’m encouraged by my progress so far. Awaiting the next segment of your story. Thanks for sharing. You write with such description – it’s like I’m watching a soap opera and can see it unfold before my eyes. Ready to turn the page, hoping it turned for you, to a much better chapter.

Issie

Carol
on July 28, 2013 at 7:09 am

I’ve skimmed the interview and will print it out to read more carefully. Sounds important! I have, however, been on so many antibiotics, including tetracyclines, that, like many treated Lyme patients, I struggle constantly with systemic candida infections. I’m hesitant, therefore, to opt for anything that will cause a worse candida flare-up. But I’m glad to learn about Dr. Stephen Fry.

It’s all too complicated.

Issie
on July 28, 2013 at 12:06 pm

I think it’s really important what he is finding with his patients (and the ones that are really adhering to the diet) is making some great improvements. I was in 3rd stage Chronic Kidney disease and I have reversed that to almost Stage 1. That is unheard of. Those that are not doing the diet so strict are not getting the improvements that I am. I think that is the key. I pulse my antibiotics and anti-malarial herbs and it is very low dose. I take probiotics at a different time of the day and that takes care of any potential yeast problems. I’ve also recently added grapefruit seed ext. and that also helps with yeast problems. There is the herx reactions that you go in and out of. You can never really predict when that might happen. But, mine are coming less and with less intensity. Since this protozoa is something, that at this time, it is not thought that you can totally eliminate – only control —-this is something that must be a lifestyle change. I’m 7 months into this and my progress is amazing. I’m very encouraged. I do feel the immune system and focusing on that is so important – it has been faulty for a long time for us to be where we are. I do agree that we probably will not get totally “well” – but more and improved quality of life is my goal. I can see the light at the end of the tunnel. Things are getting better.

Issie

sian james
on July 28, 2013 at 2:51 am

Another excellent piece, thank you. I havent tested for Lyme, haven’t been able to access the right resoures yet. I did test positive for protomyxzoa. From experience, I am much better when on antibiotics, though that remission does end after a while. I also have a genetic kidney condition which involves biofilm infections, so that’s important to me. I don’t think anyone doc has the answer to my condition; and I am suspicious of treatments that require endless money and drugs. The reality, as you so vividly write, is that we are essentially lab rats to a lot of medics practising speculatively. I’m going with the cautious approach of chipping away on a number of fronts, to improve my functioning, not aim for cure. I do think there is an imnportant immune side of many people’s experience of ME – as there is endocrine, environmental, genetic – and that any answer that focusses narrowly on one aspect is unlikely to produce lasting results.

Thanks again – looking forward to the next installment!

Carol
on July 28, 2013 at 7:28 am

I agree strongly with your comment about aiming to improve functioning rather than expecting a cure. That’s pretty much where I am now. It’s just so hard to know if a particular treatment or supplement or diet or whatever is the cause of improvement, or if it’s just time in the ferris wheel cycle.

Carol

Sarah Robinson
on July 29, 2013 at 11:44 am

Carol, thank you so much for your vivid portrayal of your pilgrimage. I now feel lucky that I haven’t had the money (or energy) to go to so many doctors. And I don’t have the brain power to figure out which protocol I ought to be seeking out. Nonetheless, I’m thankful for each person in this community who tries a new protocol and shares her/his experience. One day, perhaps, we will all be healed. In the meantime, it helps to know I have company on this hilly, twisting road. Thank you.

Erin
on July 29, 2013 at 2:09 pm

Has Mold Toxicity been ruled out? Real Time labs has a great mycotoxin test to check for mold toxins in your body. Dr was leaning towards Lyme in our case but turned out to be mold. And we didn’t have hardly any in our home. The methylation process was defective in the patients body. Also look into MTHFR genetic issues. Good luck.

May was Lyme Disease Awareness Month and Mosquito Squad of Greenville is committed to raising awareness of this growing health issue. Very useful info. Hope to see more posts soon!

LifeSucksButImFunny
on October 21, 2013 at 12:38 am

It seems we’re on a similar schedule. I was diagnosed w Lyme by Dr. Streit down in Howell back in May, He’s definitely super lyme literate but not the friendliest. I’ve been told by a few people to look into Dr. Fein because she is closer and supposedly has a better bedside manner.

Been on crazy double dose antibiotics and now added in difuclan. I’m on so many meds in general that it’s usually impossible to figure out which new problem is a symptom or a side effect. I’ve been in the process of applying for long-term disability. As you can imagine, it’s not easy ad only adds more anxiety to daily life.

Everyone in my life is sick of hearing about this stuff so it’s nice to come to a place where someone gets it!

Susan
on November 4, 2013 at 6:15 am

Carol

What is the name of the doctor you are seeing now?

Carri Andersson
on March 12, 2014 at 3:26 pm

This too was my story. Well, similar. I had the infection for at least 5 years before treatment. Just want to throw out to my LD Doctor’s name – Dr. Stephen Meress, Fox Valley Wellness in Wisconsin. Feeling great now. But, man. I’ve been there and back too. Spent the money, time, effort. Took the pills, supplements, diet changes. Stopped just short of having a port. Also did hyperbaric oxygen treatments. 2 of my children also had it so we were Lyme x3. Best wishes to you all.

SusieLyme
on April 27, 2014 at 2:30 pm

Are there any physicians in the Midwest that people feel is as sophisticated as Dr. Fein or Dr. Mozayeni? I am experiencing major relapse from what is likely Borrelia and/or Bartonella, which I’ve tested positive for in the past. Likely will need bone marrow biopsy, blood cultures. Do not just want to see an “LLMD” who is going to throw a bottle of antibiotics at me, but want to find someone who works to get a diagnosis and an appropriate treatment regimen. Also, for this reason, not interested in going to “integrative medicine” type person —- in my experience they do not have the training to take care of very complex, longstanding cases. Any advice would be appreciated.